Thursday, 30 October 2014

We went to a large one near to home today, partly to give the Grand children some exercise, and partly to do a bit of shopping.

However once inside I realised, it was a big mistake as the noise was horrific.

The loud speakers were churning out loud music along with staff messages, and other people were shouting, either because they could not think clearly, or they were so used to loud music that shouting was normal.

People were rushing around with shopping trolleys and in some cases left their trollies in silly places, while they went off else where.

To put extra pressure on us we also had a lot of disabled electric scooters being driven by people who really did not care that other people were around.

My walking stick was hit quite a few times, and I got to the stage where I did not want to be there as it was lethal, to anyone with disabilities.

I think a lot of people who really need these electric scooters need them for a very good reason, but these days other people seem to use them just so they do not have to walk, even if there is nothing at all wrong with them.

I have come to the conclusion that people gave completely lost all respect for others, and that is very sad.

I dread to think what it will be like when it comes to Christmas, as things will become totally manic.

Tuesday, 28 October 2014

Stigma is a terrible thing, but it's not something which is new, it's been around for many years.

We have seen stigma in many illnesses, like cancer in the 1950-60s. It's also been attached to Aids, and recently Ebola, yet much of it is caused by old stories and myths, which do not seem to go away, possibly because many people simply believe they are true.
I have been asked on many occasions whether dementia us contagious, something which has left me staggered. Some think you can catch it if someone who has dementia sneezes.

But I believe much of this stems from the fact that it sometimes seems to run in families, but most of it seems to come from the fact the some forms are called disease, like Lewy Body Dementia, which in some cases is called Lewy Body Disease, just one case in many.
Some charities sometimes call themselves " Alzheimer's Disease or Dementia Disease, and this also helps keep the stigma going. This is because professionals cannot decide what to call illnesses I suppose, or people call things by different terms and names

But I feel that much of this could be stopped, if everyone was educated properly about this illness, rather than picking up odd pieces and trying to find the truth their own way

To educate everyone we should be starting with school children, who are already learning about someone in their families who has the illness. Many of these children want to learn more about what is happening to granny or grand dad, and it's now time to start helping them understand just what is going on.
These are the people who will shape the future in stopping this stigma, and therefore we must help them to help us.
Years ago parents kept their children out of the way, when someone had dementia, but now things have changed for the best, and it would be much better without the stigma.
I have also heard stories of people crossing the road, so they did not come into contact with someone who had dementia in their families.
This usually happened in very close communities like small villages, as a family member once told me.

So it's time to find a way of getting into all schools, to teach all children that stigma, is not a nice thing, no matter which illness it's attached to. Teachers should allow people with illnesses into schools to help educate those who are our future support.

The Government says that they are dementia friendly, so it's time they factored this into education.

It does not need to be an examination study, just allow us in during free time to speak to children and explain our problems and the stigma which is attached to it.

Let us hope that sometime soon things will change and change for the best

Monday, 27 October 2014

Thousands of dementia patients are hiding symptoms from loved ones and doctors because they are ashamed, a report warns.

It compares the stigma to that of HIV and Aids in the 1980s and says as many as a quarter of those suffering are refusing to speak out.

Doctors say patients tell them how their friends ‘disappeared’ after they were diagnosed and in some cases how their own children have stopped visiting.

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A joint report led by the Medical Research Council warns that this ‘unacceptable stigma’ is denying patients vital help and resulting in them being ‘marginalised’ from the rest of society.

Around 850,000 patients in Britain are thought to have dementia but only half have been given a proper diagnosis. The Government is urging GPs to improve their detection rates over concerns that victims and their families are struggling in silence.

But part of the problem is that many patients are too afraid to be diagnosed so do not make an appointment in the first place.

Professor Hugh Perry, chairman of the neuroscience and mental health board at the MRC, said: ‘The embarrassment and shame of having a disease associated with both age and mental health is a real barrier to people seeking the help they need.

‘A long time ago there was a stigma attached to cancer and more recently HIV. In both cases it stopped people from getting treatment and that’s sadly the case with dementia.’

The report is based on in-depth interviews of patients with dementia, their relatives, specialist doctors and academics.

'PEOPLE DON'T WANT TO KNOW'

Sylvia Kahn, 77, a retired solicitor, was diagnosed with dementia three years ago.

She said that since then people ‘don’t want to know’ and often ‘turn away’.

The grandmother, who lives with her husband Bob in Warrington, Cheshire, said: ‘Those of us with Alzheimer’s are often deeply hurt when people are afraid to talk to us.

‘Why should you stigmatise us? We didn’t ask for the dementia. It’s not a crime.’

Mrs Kahn decided to leave her job after being diagnosed with Alzheimer’s following a series of memory scans in 2011.

With her husband she now works for the Alzheimer’s Society giving talks and helping raise funding for the research.

It describes how patients’ friends and close relatives often distance themselves and don’t ‘dare ask’ how they are. In some cases, the report warns that patients’ own children stop visiting them because the deterioration is ‘too hard to watch’.

And it also cites figures from a study in 2012 involving 157 dementia patients which found one in four had tried to hide their symptoms from family and friends.

George McNamara, head of policy and public affairs at the Alzheimer’s Society, which was also involved in the report said: ‘We’ve come a long way in terms of raising awareness but we still need to do more as a society to banish the stigma surrounding dementia once and for all.’

In a forward to the report, Professor Alistair Burns, a Department of Health expert on dementia and Baroness Sally Greengross, chairman of the All-Parliamentary Group on dementia, write: ‘We still have much to understand about why dementia remains outside the realm of acceptable conversation.’

Early symptoms of dementia include loss of memory, difficulties concentrating, depression and confusion. Certain drugs including donepezil, rivastigmine and galantamine can temporarily halt the decline but only if given in the early stages.

Last year David Cameron pledged to make dementia a national priority and said there would be a cure by 2025. The Government has also promised that by next year doctors will have diagnosed two thirds of all patients with the illness.

Recent estimates show diagnosis is as low as 45 per cent and in some areas as low as one in seven.

Last week it emerged NHS officials were planning to pay GPs £55 for every new patient diagnosed with dementia between now and March.

A Department of Health spokesman said: ‘Real change is needed, that’s why we are working with the Alzheimer’s Society and Public Health England to help tackle stigma and increase understanding.’

Sunday, 26 October 2014

I have always said that it is possible to live well with dementia, if things go right from the start.

It's all about getting an early diagnosis, like any other serious illness, and having support from family and friends where possible right from the start.

I know that some people do not have family for support and my heart goes out to them, but there are also people who have family around them, but never get support, because people for some reason back away when a person gets dementia, and this makes mee feel sick at times. Some family members refuse to accept the diagnosis, and this had a knock on effect.

But if we get support from people who mean a lot to us then the sky is the limit.

However we must also try these days to get support from doctors, nurses, social workers and everyone else in the health and public services. This is taking a very long time and is hit and miss at times, a post code lottery that many in government circles deny, but whether they like it or not it does exist.

This should also take in people like physiotherapists and occupational therapists, who give us a lot of support. I will however say that some of these people do not understand dementia as well as we would expect.

I did however have an assessment with a physiotherapist a week ago, and was staggered when a young lady walked into the room, because she looked as if she should have been in school, but she was brilliant, and very helpful

My wife said later that It is because I am getting old and this makes nursing staff etc look so much younger.

Many universities are training nurses to understand dementia and that is a brilliant start, but we also need doctors and consultants to start understanding our problems.

I am honoured and privileged to work with Northumbria University, where I talk to graduate nurses on a regular basis, and I am thrilled at their standard of nursing training, and dementia work they are doing.

The other day I heard about a consultant who would not listen to a carer, because she was not his patient, I have to ask what planet this person came from in this day and age.

I think we should also take on board that one person with dementia, is not the same as norther person with the illness. There are so many variations of this illness, that no two people, even two with the same type of dementia are the same. We are all individuals, with totally individual symptoms and problems

Let us hope that before long dementia training will be given to all staff in the public and health sector, so we are treated with dignity and respect, the same dignity and respect that others demand and expect as their right

Saturday, 25 October 2014

After being involved in dementia projects for a few years including government projects I wonder if I am becoming synical, as many political parties seem to get involved, but do not have the real interest to get things moving poisitively.

The dementia strategy was launched and yet the money was nor ring fenced, and the strategy was not mandatory. It was not new money neither as the minister admitted that the money was already in the system and needed to be spent more wisely.

We are now seeing Mr Cameron using dementia in the G8 summit, and now paying doctors £55 each to diagnose people earlier, something than many people are angry about. I do wonder why the money was not put into research rather than paying doctors to do the same thing they did two years ago,

Many of us feel that dementia is simply being used as a distraction, and really does not mean anything at all to politicians.

One moment they are implying that dementia is age related, and the next they want early diagnosis, but they never talk about the younger people who have dementia, is this because they do not really understand that the illness is not age related.

I live in hope that one day we will get politicians who tell the truth and stop using peoples lives to distract from their own political failings.

KEEPING the brain active and eating a healthy diet are the best ways to protect against dementia in old age, say experts.

Studies show that a handful of walnuts a day can stave off dementia [ALAMY]

Two breakthrough new studies have revealed that being good with words and eating just a handful of walnuts every day can help stave off the ravages of the brain disease.

The simple tips mean that millions of people could protect themselves from Alzheimer's in old age by introducing the easy changes to their daily lives.

There is increasing evidence that the key to beating the disease is to keep the brain active from middle age and to ensure a diet packed with health-boosting vegetables, fruits and nuts is followed.

Proving the old adage "use it or lose it", a new study has shown that being good with words could help stave off ageing conditions including dementia.

Experts have discovered that having a rich and varied vocabulary, just like TV personalities Stephen Fry and Will Self, protects against brain decline.

As people get older, their brain's intelligence is put under strain.

But researchers from the University of Santiago de Compostela in Spain have studied what factors can help to improve this ability and they conclude that having a higher level of vocabulary is one such factor.

"Cognitive reserve" is the name given to the brain's capacity to compensate for the loss of its functions.

With over 830,000 people in the UK living with dementia and that number on the increase, investment in research to find ways to prevent the condition is crucial

Dr Laura Phipps

This reserve cannot be measured directly; rather, it is calculated through indicators which are believed to increase this capacity.

Cristina Lojo Seoane, co-author of the study published in the journal Annals of Psychology, said: "We focused on level of vocabulary as it is considered an indicator of crystallised intelligence - the use of previously acquired intellectual skills.

"We aimed to deepen our understanding of its relation to cognitive reserve."

The research looked at 222 healthy individuals and 104 with mild cognitive impairment who were over the age of 50.

They measured their vocabulary levels as well as analysing their years of schooling, the complexity of their jobs and their reading habits.

They also analysed the scores they obtained in various established vocabulary tests.

Ms Logo Seoane said: "With a regression analysis we calculated the probability of impairment to the vocabulary levels of the participants."

The results revealed a greater prevalence of mild cognitive impairment in participants who achieved a lower vocabulary level score.

She said: "This led us to the conclusion that a higher level of vocabulary, as a measure of cognitive reserve, can protect against cognitive impairment."

A second study, from experts at New York State Institute for Basic Research in Developmental Disabilities (IBR), revealed that eating a diet packed with a handful of walnuts every day can have a major impact on keeping dementia at bay.

The new research, published in the Journal of Alzheimer's Disease, found that potent ingredients in the popular nuts can have a beneficial effects in reducing the risk, delaying the onset, slowing the progression of, or preventing Alzheimer's.

Led by Dr Abha Chauhan, the study found significant improvement in learning skills, memory, reducing anxiety, and motor development in mice fed a walnut-enriched diet.

The researchers believe that it is the high antioxidant content of walnuts which may protect the brain from the degeneration typically seen in Alzheimer's.

Oxidative stress - the damage caused by molecules that the body naturally produces - and inflammation are both major causes of the disease.

Antioxidants protect the brain and other body cells from the damage caused by chemicals known as free radicals which cause oxidative stress.

This causes damage to DNA, proteins and fat molecules in the brain cells.

The new study shows that walnuts in the diet can help protect against this damage.

Dr Chauhan, said: "These findings are very promising and help lay the groundwork for future human studies on walnuts and Alzheimer's disease - a disease for which there is no known cure.

"Our study adds to the growing body of research that demonstrates the protective effects of walnuts on cognitive functioning."

The researchers examined the effects of dietary supplementation on mice with six per cent or nine per cent walnuts, which are equivalent to one ounce and 1.5 ounces per day - around a handful - of walnuts in humans.

This research came after a previous study by Dr Chauhan that highlighted the protective effects of walnut extract against the oxidative damage caused by the amyloid beta protein.

This protein is the major component of amyloid plaques that form in the brains of those with Alzheimer's disease.

Walnuts are also packed with vitamins and minerals and are the only nut that contains a significant source of alpha-linolenic acid, an omega-3 fatty acid with heart and brain-health benefits.

The researchers also suggest that ALA may have played a role in improving the behavioural symptoms seen in the study.

Dr Laura Phipps of Alzheimer's Research UK, said: "There is evidence to suggest that keeping the brain active may help boost 'cognitive reserve', allowing the brain to resist the early damage from diseases like Alzheimer's for longer.

"Some studies have linked particular diets to a lower dementia risk, and although it's unlikely that any single food will be able to prevent the condition, a healthy, balanced diet may help reduce the risk of dementia as part of a healthy lifestyle.

"With over 830,000 people in the UK living with dementia and that number on the increase, investment in research to find ways to prevent the condition is crucial.

"In the meantime, the best evidence suggests that eating a healthy diet, doing regular exercise, not smoking, and keeping weight and blood pressure in check can all help to lower the risk of dementia."

Friday, 24 October 2014

Today I had the honour to go and speak to graduate nurses at Northumbria University about Living well with Dementia.

This was the third of three sessions this term, and its amazing the different response you get in different sessions

The first was slightly subdued, partly I suppose because its not a subject that everyone wants to learn about.

The second got more response and some questions, but today for some reason, I seemed to get a response that was unexpected and difficult to cope with.

This was because a few people were in tears, and these days I find it hard when a person cries, but they must have really understood the problems we undertake daily.

I am not complaining about these people crying, because there are times when this illness reduces me to tears when things become difficult, to do or understand

We had lots of questions at the end, and as my wife said there were so many questions, that it could have gone on for longer, but someone else was following us, and its unfair to hold things up.

I have been to this University on a number of occasions during the last few years, doing very similar talks, and it never gets any easier, partly because, I know that even over the last year, I have lost control over so much.

Its been so nice being able to talk about this illness, but these days I am more selective about the things I talk about, because it can be very sad and hurtful, when I think about the Job and hobbies etc, that I have lost through my memory, or they have simply become too dangerous to do any longer.

I hope to be able to do this for a little longer, but I know that when it all becomes too difficult, I have achieved something in as much, that I have been able to tell Nurses and lecturers, what our life is live, and possibly how they can help.

My Grammar and spelling are sometimes lost these days, unless I use spell check, and I still use voice activated software to write my presentations which are all written in font size 16, so that I can follow what I have written

Life can be hard, but today I felt as if I had won the lottery these people are so nice to talk too

I sometimes feel very nervous giving presentations, but at this University, I feel relaxed and at home

Patients blast £55 dementia diagnosis fee

A scheme aimed at boosting dementia diagnosis rates by paying GPs £55 for every patient they diagnose has come under fire.

Under the NHS England scheme, doctors would get the cash for every extra patient on their dementia register next March, compared to September just gone.
But the scheme has been criticised by the Patients Association as a ‘distortion of good medical practice’ and has also been given the thumbs down by the Royal College of GPs and the British Medical Association.
And John Davies-Allen, from Thornton, who was diagnosed with dementia two years ago, said he was “not happy about” the plan.
Mr Davies-Allen, 53, said he agreed more needed to be done to improve diagnosis of the condition and said he had been diagnosed at the Mount View Memory Clinic in Fleetwood after his GP missed signs including problems with this balance.

But he said paying GPs was not the way to go.
“It should be standard practice to diagnose people and GPs should not have to be paid extra,” said the dad of one. “I’m worried this could lead to GPs mis-diagnosing people just to get the money.
“When you get that diagnosis your whole life changes so if that diagnosis turns out to be wrong that really isn’t going to be very nice for the person.”
Fewer than half the estimated 800,000 people in the UK with dementia have received a formal diagnosis, with NHS England looking to raise that proportion to two-thirds by next year.
Under the plans, an extra £5m is being provided to help boost efforts to identify people with dementia to enable support to be offered to them.
Dr Steve Parr-Burman, from North Shore Surgery in Blackpool, insisted the £55 payment would go back into improving diagnosis rates.
“We’re not going to use it to increase our pay and we won’t be spending it on the golf course or on other leisure activities,” he said.
“It will be ploughed back into the practice and into covering the costs of improving diagnosis.
“I can see what people are saying about it being part of our job, but we have to diagnose lots of conditions and we will now have to actively look for patients to screen for dementia. The £55 payments may not even cover the costs of doing this.”
Dr Parr-Burman said fears the scheme would result in patients being mis-diagnosed were “nonsense”.
“We are highly ethical and we are not going to label someone as having dementia for £55, it’s a nonsense.
“GPs have a really complicated reimbursement system and we already get paid for screening patients for things like asthma and stroke.”
Dr Amanda Thornton, clinical director for adult community services at Lancashire Care NHS Foundation Trust, who works at Bloomfield Surgery, said: “Ensuring an early yet accurate diagnosis of dementia is really important and making sure that people have the appropriate access to treatment can have a real impact on so many lives.”
The trust runs Memory Assessment Services which make assessments, offer treatment and therapy, and put on memory management groups.
Dr Martin McShane, NHS England’s national director for long term conditions, said: “Dementia can be devastating both for individuals and their families.
“We know that more needs to be done across the health service to ensure that people living with dementia are identified so that they can get the tailored care and support they need.
“This additional investment is part of a larger range of measures to support GPs in their work tackling dementia.”

Thursday, 23 October 2014

I have been asked to trial a new brain game, and ask others who have this illness to try it and give their views.

The game was designed by staff at BUPA a private but highly respected health firm in the UK.

I tried this game and confess that I struggled with it, but I did wonder if that's my brain now.

Not only does it test your brain, but it also tests your reactions and eyesight, as the squares appear to move at times , so you need to keep track of them.

I do feel that this will catch on when it's been launched, as brain training games have helped me over the last few years.

I have attached the email so that you can get a better idea of the work BUPA are doing

I have attached the link to the Websight, but if the link does not work, please do a search for it on the computers top search bar.

Hope you don't mind me getting in touch out of the blue - I'm emailing from Bupa with news of a game we're launching which I thought might be of interest given your blog focuses on living with dementia.

In short, we've developed a memory game with a twist, designed to give users a sense of the confusion and disorientation that can come with living with dementia.

The aim of our game is to match cards to their pairs in the allotted time, however as time goes on, the cards start to move and become gradually more blurred making it increasingly difficult to complete. The idea is that users will feel frustrated and confused, reflecting how people with dementia often feel.

By 2025 it is predicted that more than one million people will have dementia. With our game we hope to raise awareness of the condition and give users a small insight into the some of the feelings those living with dementia can experience.

The game launches on the 15th October, so this would be a sneak preview for you and your readers. You can share it letting users know of the twist, or keep it under wraps so they only find out at the end - up to you. You can play the game here

Additionally, we also have some survey stats around 'memory blots' - those moments we can all experience where we lose our keys or wonder what we went upstairs for, but for people living with dementia, can be a daily occurrence. Do let me know if these might be of interest and I'd be happy to share these or any further info. And of course, if this isn't your bag, then let me know and I'll hold off getting in touch again.

Please feel free to try this and post your comments back to me where they will be added at the bottom

I have a brilliant day today. It all started when I went to Northumbria University to speak to graduate nurses about living well with dementia.

Thus was a very good session, as most people seemed to be very animated and interested. We discussed all of the problems we face on a normal day, and also discussed being treated with dignity and respect.

After the session there were many questions, from people who wanted to know more about certain topics, but on the whole my wife and I felt it was well received, and well worth doing.

That was my second session this week, and I return on Friday to do the third and final session before Christmas.

This university is doing so much work on dementia awareness, within most departments, that I feel honoured to be part of it. I now feel that dementia is getting the prominence it requires in Newcastle upon Tyne, due to the work this university is doing.

Tuesday, 21 October 2014

Dementia: Diagnosis rates rising in South Asian
community

The success of an Alzheimer's Society project in
Rochdale means it will be extended to 15 more areas in England, including
Oldham.

The South Asian community is seeing a
faster rise in the number of people diagnosed with dementia than the general
population.

There are more than 25,000 people with dementia from black, Asian and
minority ethnic (BAME) groups in England and Wales.

This figure is expected to double by 2026 and rise to over 172,000 by 2051.

The Alzheimer's Society has been working in Rochdale with local faith and
community organisations to create tailored services such as weekly information
sessions and a Bollywood-inspired DVD in Hindi.

Project manager Diana Barbosa said the Rochdale scheme's success means it
will be extended to 15 more areas in England in the coming months, including
Oldham. Language barriers
But a report from the All
Party Parliamentary Group on dementia has found that people from BAME
backgrounds are less likely to receive a diagnosis or support.

For Saleema Begum, a Punjabi speaker who has dementia and has forgotten most
of the English she learned, many of the general services on offer are
inaccessible.

Saleema Begum (right) has dementia and her son Saeed Anwar
(left) explained the challenges they face

Her son, Saeed Anwar, said she wouldn't be able to understand and communicate
with people providing health services and this can lead to issues around
cultural needs such as the requirement for halal foods.

Dementia is a word which does not exist in many South Asian languages.

Mr Anwar explained: "Within our community, it's more a mental health issue.
They use a word called 'pagal', which means crazy".Delayed diagnosis
An increase in the South Asian population in the UK in the 50s, 60s and 70s
means the number of people aged 65+ is due to rise sharply.

The government has predicted nearly a seven-fold increase in the next 40
years of people with dementia from BAME backgrounds.

However, stigma surrounding the condition is common and cultural differences
can stop people getting the help they need, say health campaigners.

Shahid Mohammed told North
West Tonight reporter Gill Dummigan that, in South Asian households, it is
usually the family's responsibility to care for elderly parents.

NHS 'to grind to halt' with dementia warns professor

The NHS will "grind to a halt" unless
more is done to help care for dementia patients in the community, warns Wales'
only professor of geriatrics.

A quarter of patients in district general hospital beds in Wales have
dementia as one of their conditions.

"It's a challenge that's going to get even bigger if we don't do something
about it," Prof Anthony Bayer told BBC Wales' Week in Week Out.

Ministers admit a "new push" is needed on how dementia services are
developed.

A recent audit of the NHS Memory Services in Wales by Prof Bayer compared the
amount of money spent on patients in Wales with those in England.

It found that on average, memory clinics in England spend twice as much on
staff for each new patient as they do in Wales. Wales also had the worst
diagnosis rates in the UK.

Prof Bayer told the programme: "Currently, there are about 45,000 people with
dementia in Wales and that is due to rise by 1 or 2% year on year so the numbers
are rising exponentially.

"The real problem is that still less than half of those patients are even
diagnosed."

Many patients in hospital with dementia will have other ailments too which
could be treated in the community.

Some have dementia alone, but are waiting for care to be in place before they
can be discharged.

Chris Roberts has dementia at a younger age

CASE STUDY - Chris Roberts, 53, from Denbighshire,
has dementia while his wife Jayne is also dealing with her mother's
dementia.

"The biggest reaction I get at my age talking about it [having dementia] is
disbelief.

"People don't want to believe it themselves because they would be admitting
they could also get an illness that could lead to dementia - I wish I could
disbelieve it."

Prof Bayer said that lack of support means too many patients are ending up in
hospital.

"One in four people in district general hospital beds have dementia," said
Prof Bayer. "If you actually shifted more resource into the community then you
could stop a lot of these unnecessary admissions.

"And if people did go into hospital you could get them home much more
quickly."

He added: "If we don't do anything then the whole system is going to grind to
a halt."

Saturday, 18 October 2014

I was on a South West train going from Farnborough to London when I over heard a conversation between two well dressed city people.

One of them a lady said that she was always getting a parking ticket for being late back to the car park, because the parking limits were too short, and she really needed more time with her friends.

Her friend a gentleman, I used that term loosely, said that he had done that three times, but in the third day, he had told the parking warden that he had early onset dementia and had forgotten where his car was parked.

Guess what, he got off. He told this lady to use this excuse, because if it worked for him once so he was going to do it again.

My wife was not sitting next to me that day otherwise I guess, these two would have had a mouthful from her.

I was very upset and could not believe that anyone could be so evil as to think of something like that.

Many people with this illness, would probably get a parking ticket for being late, even though they have a good reason. But I cannot accept others using this illness as an excuse, when they have no real idea what it's like, or what it's like to live with.

If I had, been switched on that day I would have taken their photographs and reported them, but I was so disgusted that I sat there and stewed about it.

When the train arrived in Waterloo they were off very fast and disappeared, before I could say anything.

Perhaps it was good that I did not confront them because I was so livid.

Last month I saw a orthopaedic surgeon about my knee and hip problems.

He had a very strong foreign accent, was so rude and thought that I just wanted a hip replacement, which I did not. To be very honest I do not want any operations at all, just want help to get around my problems on a daily basis.

I had been told prior to this appointment that it was osteoarthritis in both joints, which was fine, but if wanted to know who to manage the pain and also see if I could get some physiotherapy which may help. I had seen a physio once, but he took no notice of my memory problems at all, and also refused my wife access so that she could help me to remember the exercises.

However as I was struggling with my balance, my consultant at the i hospital had arranged some physio exercises which I can do at home, all of which are written out on sheets of paper with diagrammes where needed.

Yesterday I was refered back to our local hospital for another physiotherapy assessment, where I was staggered to see a young lady who looked so young to me, she did not look old enough to to the job.

Yet she took the time to understand my problems and was so helpful. She also knew about Lewy body dementia which was amazing. My wife had pointed out that she wondered if my problems were due to gait a problem in dementia and she said that each person with dementia was vastly different to the next.

She said the exercises I was doing were very helpful, but gave me a few more to strengthen my back.

This was a vast difference from the original consultant, who asked if I wanted a hip replacement, yet knew nothing at all about dementia.

On Monday I have an MRI scan where it is hoped to get the full damage to both joints, but it sounds as if it is osteoarthritis and muscle weakness, so I just have to get on with it.

I long for the day when all NHS staff are trained in dementia and memory problems like this young lady.

Thursday, 16 October 2014

Dementia diagnosis targets: a problem of scale?

GPs are under pressure to reach diagnosis targets for dementia, but the prevalence estimates on which

Calculating the likely prevalence of diabetes at a local level is fraught with difficulty.

Doctors in the UK are under increasing pressure to boost diagnosis rates. For example, GP practices have been set targets in dementia and can trigger an inspection if they fall behind in other clinical areas such as asthma, diabetes and even depression. There are understandable concerns that patients might be left suffering or at risk due to a lack of a diagnosis, but what is the science behind these targets? Can you make a reliable estimate of the numbers of people who should be diagnosed but aren’t, when – by definition – you don’t know about them?
Science is all about measuring things, and when it comes to taking measurements you have to get the scale right. While it might be entirely reasonable to use the milometer in your car to calculate the distance from London to Birmingham, it would be absurd to use the same instrument to map out the dimensions of a tennis court. Get the scale wrong and the margin for error becomes unacceptable, giving measurements that are meaningless or even dangerous.
Unfortunately, the tools used to make estimates in healthcare are far more abstract than they are in physical science, meaning they can be applied in entirely the wrong situation without appearing the least bit ludicrous, leading to erroneous assertions being made without any appreciation for the significance of scale.
Take dementia, for example. How can you work out the diagnosis rate for a given GP practice? The easy part is knowing how many patients have already been diagnosed – GP records have a fairly accurate account of this from their dementia registers. It is working out how many cases there should be – the prevalence of dementia - that is the tricky part.
Prevalence studies have been conducted in an attempt to estimate national figures for the number of people with dementia, and here the scale is important. You can’t estimate national figures from a small, local study, because the possibility of error is too great, and to factor up to give national figures would magnify any error many times.
In order to minimise this error, you have to amalgamate all the good quality studies to increase the population base of your work and bring in a variety of settings, thus ironing out any discrepancies. This is what the Delphi study group did when they met in both 2007 and 2014 in order to make the best estimates we have for dementia prevalence for the UK – which is where the oft-quoted figure of 800,000 people in the UK living with dementia originates. So far so good.
Things get tricky when you try to scale back down to the level of a GP practice. Most practices have fewer than a hundred patients with dementia, and the problem when you shrink the data down like this is that the errors you have so carefully ironed out by increasing your sample size are all reintroduced by applying the figures to a small population, complete with its own unique demographic and idiosyncrasies. You will have made an error of scale.
The proof of the pudding is shown in the bizarre statistics that result. My own practice was given a diagnosis rate of 127% in 2013, which was then changed to 59% in 2014! To accurately estimate the number of cases in my practice would require a much more local form of measurement – something that takes into account not only age, but factors such as ethnic mix, the type of housing available, the number of nursing homes and whether or not homes specialise in dementia care.
The second big problem with diagnosis rates is that even the national figures must have a degree of error. They are estimates, and estimates should always come with error bars. So how big is this error, and is it acceptable? Well, for dementia, we have no idea, because the prevalence figure is given as 7.1% in the over-65s, with no allowance for error at all.
We can get some idea of confidence intervals, however, if we look at a different condition, diabetes, where these figures are provided. For Surrey in 2014, for instance, the prevalence is estimated at 6.9%, with a possible range of 5-10%. This means a 5% margin for error, which is nearly as great as the figure itself – something that should ring alarm bells. Applied to my own practice our quoted diagnosis rate of 79% could actually be anywhere between 55% and 110%.
The full significance of such a margin for error becomes clear when you consider a more familiar metric, such as a person’s height. It would be like estimating an individual’s height to be 5 feet 6 inches, but then admitting that their real height could be anywhere between 4 feet and 8 feet.
Such a range of error might still be acceptable for some purposes – such as deciding how high to make a doorframe so that they don’t have to duck – but would be entirely inappropriate if you were buying them a coat. The proper use of prevalence figures is to estimate the need for services, for example the number of diabetes specialist nurses required, but to give an individual GP a target for how many people to diagnose is like buying the coat and hoping for the best.
If this were only of academic interest these errors might not matter, but this affects real people and real lives. Health service commissioners are already applying financial incentives for GPs to raise diagnosis rates in dementia, and there is a very real danger that doctors will overdiagnose and misdiagnose in the effort to achieve such targets. The ethics of such a strategy are highly questionable, and for the science behind it to be so fundamentally flawed raises very serious questions indeed.

Wednesday, 15 October 2014

The old photos helping trigger memories in people with
dementia

Pictures taken by a little-known
photographer between the 1930s and 1960s have found a new use helping to trigger
memories and reminiscences among people with dementia.

When Joseph Hardman died in 1972, his wife donated almost 5,000 glass
negatives to the Museum of Lakeland
Life and Industry in Kendal, Cumbria.
The stunning images document decades of daily life from all over the Lake
District - from antiquated farming techniques to beautiful landscapes.
And now they've been used to help a group of people living with dementia in
the region - taking their own versions of his images and using them as a
catalyst to reminisce about their lives.
Hardman moved to the area in 1911 and between the 1930s and 1960s he covered
up to 200 miles a week in a taxi canvassing the region and selling his photos to
local newspaper the Westmorland Gazette, according to the museum.
The idea behind the project was simply to follow Hardman's footsteps over a
five-week period, says Anne-Marie Quinn, who ran the sessions and works for Lakeland Arts.
So just like Hardman himself, the group took taxis everywhere, indulged in the
tea and cakes he was fond of, and visited some of his favourite places.
One such place was Dora's Field in Rydal, made famous by the poet William
Wordsworth.

"That was also a trigger for Wordsworth's poetry, tapping into people's deep
long-term memory - a lot of this generation learnt that poetry by heart," says
Quinn.
As locals of the region, images of the landscapes particularly resonated with
them, she says.
Upon passing through busy traffic in Bowness, one person remarked to Quinn
how she'd always wanted to live by the lake. The memory preceded anecdotes about
how she had once cultivated a garden and could name all the different types of
trees.
"It just triggered really valuable conversation that gave you a sense of this
person, rather than this person with dementia," Quinn says. "That was really
powerful."

Find out more

Improving dementia memory therapy, part of a week-long series by Inside Out, was broadcast on
BBC One North East & Cumbria, Yorkshire & Lincolnshire, South West and
West on Monday 13 October. It will be available on the iPlayer for 30 days.

Joyce Grosvenor, who still lives independently,
spontaneously began writing in shorthand again - she hadn't used it for years.
Grosvenor didn't even realise she was doing it until Quinn saw her scribbling in
her diary. Grosvenor later used her rediscovered skill to design her own memory
map of their journey, including the words "wonderful" and "life-enhancing".

A 1953 photograph of Abbot Hall revealed an outdoor dancefloor in front,
where there is now an oval-shaped lawn. People used to celebrate on the
dancefloor during events such as VJ Day at the end of the war or the Queen's
coronation, explains Quinn.
"That led us to question what songs were being sung, tapping into a sense of
fun," she adds. Soon the group were singing a rendition of Some Enchanted
Evening, from the 1949 musical South Pacific.
"Every time we met there was singing - triggered by conversations about what
musicals were about at the time," Quinn recalls.

Abbot Hall with its outside dancefloor

Joseph Hardman recorded the traditions of Lakeland
life

Reminiscence therapy is a burgeoning part of dementia care, says Martina Kane
of the Alzheimer's
Society.
"[Many] deep-seated memories have a lot of emotion attached to them," she
says. "You can tap into someone's positive emotions of their past and that can
bring some positive emotion to them."
"In the dementia care world reminiscence is up there as one of the leading
groups of therapeutic approaches," explains Prof Bob Woods, an expert in the
clinical psychology of older people at Bangor University.
"Essentially it's a good way of facilitating communication, and so it helps
people to feel more socially integrated and comfortable," says Woods. This is
often as important for the carers as for those with dementia, he says, allowing
them to see the person beyond the disease.
Aside from emotions and familiarity, the nature of dementia often means it's
easier for people to recall older memories than quickly bringing to mind
day-to-day events, Kane adds.
And talking is typically less powerful than having something that people can
look at, pick up and feel, says Woods, even if the person doesn't necessarily
recognise exactly what it is. "It starts off a process of talking, sharing and
communicating."
Photographs are just one way to stimulate memories. Songs and poetry often
came out of conversations inspired by Hardman's photos, says Quinn.

Anne-Marie Quinn (far left) says the landscapes
particularly resonated with local people

"Music can be a really powerful trigger," explains Kane. It's not uncommon
for talented musicians to continue playing long after other parts of their brain
have deteriorated, she adds.
Videos of events like the Moon landing can be equally powerful, Kane says.
Sometimes just a football or quilt is enough, she adds.
In the group's case, they used props appearing frequently in Hardman's
collection. "Using the parasol was always lovely," Quinn says, "it rooted them
in [time], like shining a little light on the past."

What is dementia?

An umbrella term referring to a collection of symptoms, which may include
memory loss and difficulties with problem-solving or language

Progressive condition caused by brain disease, currently without cure

Alzheimer's disease affects 62% of those living with dementia

About 800,000 people formally diagnosed with dementia in UK - but only 43%
with the condition get a diagnosis

Approximately one in 20 people over age 65 have it, rising to one in six by
the age of 80. One in three in the UK will have it by the time they
die

Of course not all memories are happy ones.
The song If You Were the Only Girl in the World reminded Grosvenor of her
father singing it to her sister, explains Quinn. "That had quite a sad memory
because her sister died [young] and so it was very poignant."
It could be considered a gamble bringing up memories without any idea of what
may surface.
"But it's not necessarily a bad thing if a person becomes emotional in a
different way," says Kane. "It's important to let people tell their story [and]
making sure you acknowledge someone's feelings."
"One of the main advantages of reminiscence therapy is that it's really
person-centred, it can be very individualised - so it's going to depend on the
person and what their memories have been," she adds.
Kane says that although it's becoming more common to use this type of
therapy, it's more prevalent in social care settings than healthcare. "It's
still something we'd like to see an awful lot more of."
A US study last year found that songs from classic musicals - such as The
Sound of Music, The Wizard of Oz and Pinocchio - helped
improve brain function in Alzheimer's patients.
And a Dutch dementia care "village" has experimented by having different
houses each designed to evoke various eras and styles.
A lot of it is about familiarity, says Woods. Many care settings in the UK
also have "down memory lane" sections, he says.

But for Quinn, the project was always about more than just reminiscence - she
was interested in the present and forging new memories as well.
"I was trying to [create] a project that would generate wonderful
experiences," she says.
"When dementia compromises your capacity to retrieve memory, people still
have an imaginary and emotional life and actually you can find out a huge amount
about a person by working with that."
"The point is to enable communication and a sense of identity in the
present," agrees Woods. The past forms part of everyone's present identity to
some extent, he adds.
And one coincidence ensured that the group witnessed the past and present
intertwine in less abstract form.
"One of the special little moments that none of us could plan for was that we
met - just by chance - one of Joseph Hardman's models, who [had] modelled in her
late teens in 1948-1949," Quinn says.
Delia Shaw featured in many of the photographs and ended up meeting the whole
group. She'd been an evacuee to the region and it also turned out that she'd
known fellow evacuee Annette Dunlop, a member of the group, decades earlier.
Quinn believes that the real benefits of the project were social. "The
connection between everybody, the friendships that people made - and the
laughter was just incredible."
"The company" was the best thing about the experience for Dunlop.
"It's been wonderful," agrees Grosvenor.

Main people these days are supported from the point of diagnosis, by family and friends, who help them through the process, and keep them active.

However there are many who may not have family are friends nearby, and they may become isolated and desperately lonely

Many people have said that they feel isolated and lonely, because they had no one to talk to, and really did not have any past times to occupy their minds.

Alzheimer's Society in the North East are rolling out a befriending scheme, to help people with dementia, so that they may feel more integrated in society, and stop them feeling lonely.

This is a wonderful scheme, and I do wonder why no one thought about this earlier.

Having someone to talk to, or go shopping, or for a walk with will make a vast difference to many.

I suppose it has endless possibilities depending on the volunteers, and there attitudes towards dementia. We should also remember that many people who have this illness do not make friends very easily as they may be nervous or simply don't know who they can trust.

There are many people out there who may well have hobbies, but may need assistance or support, and this could be ideal, if say someone like photography and needed help occasionally.

If there was a volunteer with the experience in this subject, they could be a real asset to the person with dementia.

It could be that they simply need someone to call in at home and have a chat or give advice.

There are many people with dementia, who use the internet, but feel that talking face to face with someone makes that extra bit of difference.

I really hope that this takes off, and we see it being rolled out to the rest of the country.

Who knows, but in the future we may also see the discussion groups being brought back, where people with dementia, could go and discuss anything from dementia problems, to local history.

Sunday, 12 October 2014

Photo
therapy for people with dementia

Fiona Phillips visits the Lake District to see how photographs taken in the
area for a local paper more than 70 years ago are being used to help people with
dementia.

Joseph Hardman's photographs chronicled a now forgotten way of rural life. He
travelled around the Lakes from the 1930s to the 1960s producing images for the
Westmorland Gazette.
The collection of more than 5,000 glass plate negatives are now being used by
the Museum of Lakeland Life and Industry in reminiscence therapy sessions for
people with dementia.
Fiona speaks to curator James Arnold from the museum about the collection.
She also visits people involved with the memory project including Joyce
Grosvenor who was recently diagnosed with dementia. Credits - still images are copyright and courtesy of the
Hardman Archive and the Museum of Lakeland Life and Industry.

Inside Out is broadcast on
BBC One North East & Cumbria on Monday, 13 October at 19:30 BST and
nationwide on the iPlayer for 30 days thereafter.

Saturday, 11 October 2014

Next Tuesday I am off to Wolsingham in Weardale to speak to the Mothers Union and general public about living well wth dementia.

My wife is also doing a session as she is a member of the Mothers Union, and I said I would go just there to make up the numbers and help out, although I have been told that I am expected to speak for a while.

I love this area, which is not too far from where we live, so it should be a nice afternoon.

Many of these villiages are turning dementia friendly so it will be wonderful if Wolsingham follows and becomes dementia friendly.

From what I was told last week, it seems as if the mini mental test is being scrapped, because it's only us is detecting Alzheimer's disease.

I have heard many people complaint about thus test over the last few years and wondered why it was being used at all but now thus makes sense.

Other people use more complicated tests as I have spoken about before, but many are questioning these tests too, because the results mean nothing to those with the illness or carers, because there is no right to wrong answers. Or it seems that way.

I would dearly love a clinical psychologist to come on board to explain it all in plain language.

But someone said the other day that it's all to do with statistics?

If there is anyone out there who is willing to explain this in easy to understand language, I will gladly publish it on my blog, so that it helps others to understand it all.

There must be a hospital physiologist somewhere who can explain this in easy to understand words, so we can understand what this test is for, and what you gain from it.

I myself get very annoyed after this test because I do not have the ability to answer the questions honestly without taking a guess, because I cannot remember what was said, perhaps it's something else or perhaps it's not just Lewy body dementia but mixed I simply don't know.

In normal life we do not have prompts we either remember, or it's gone, and in my daily life if I get up from my chair to write something in my computer, by the time I sit down it's all gone in a few moments

Many people think that when we are diagnosed as having dementia, we lose our sense of humour.

Perhaps some people do, but on the whole many of use retain our sense of humour, as a way of fighting this illness.

I still like reading jokes, and enjoy a good laugh, although I have been told off by carers at times, simply because they thought that we should be deadly serious all of the time

To me laughter is one of if not the best medicine anyone can get, so why not enjoy what's let of your life and enjoy it.

I confess that there are days when I am feeling low, and simply cannot be bothered, but that's the nature of this illness.

The Scottish Dementia Working Group wrote a Joke book a few years ago, and the jokes were provided by the members of the group. I bought a copy of this which was signed by some of my friends in the Working Group

A few months later we were flooded at home and had to move out into a flat for about six months, something I really did not enjoy at all, as we had lost so many of or personal possessions

But this book was my life line at the time.

Why am I laughing , a classic collection of short jokes for all of the family

Sadly I lost it when we returned home, so I bought a new copy. Its not the same as the original was signed and meant so much to me, but I still enjoy reading it.

I often read this book just to have a good laugh because life can be so very serious, and this can get you depressed if you are not careful

After a while you can tell exactly which person was telling the jokes without looking at the book.

But I guess that is because I knew all of those people.

I remember one member of the Alzheimer's Society's Living with Dementia Working Group, when it was still going a few years ago, and he could sit and tell jokes all night.

My problem was and still is that I could not remember the punch lines, or the jokes would return in the middle of the night, so I would start laughing and then wake my wife up

I always loved telling funny stories, but my wife got to the stage when she could not tell when I was being serious

A few years ago we were on a long train journey, and for some reason the train stopped in the middle of nowhere. When it started running again it was very wobbly and bouncing along the track. My wife looked at me, and for some reason I just said. I think the trains got a flat tyre?

After a few moments of quiet she looked at me, and told me off.

I did tell her a few months ago that trains do indeed have a tyre fitted over their wheels, and she would not believe me, until our Son in Law explained it to her, and even then I think she was convinced that he was pulling her leg

So now I have to be careful what I say

At one stage in life I could see the funny side of anything, and this got me into trouble on a few occasions, but I am not sure whether that was the start of this illness.

Life is too serious these days so we must enjoy ourselves, and where possible have a good laugh as it does help us feel much better

Thursday, 9 October 2014

Its wonderful to hear that someone has looked at dementia in places like care homes and Hospitals and is designing signage to suit those with the illness

A specialist sign manufacturer is leading the way in adapting care homes and hospitals for people living with dementia.

Find Signage provides products to more than 300 care homes and thousands of hospitals, both public and private, throughout the UK.

Signage is used to make it easier for corridors and rooms to be identified, in order to support those transitioning from home to residential care.

A leader in the field, Find has branched out to produce new lines of dementia-friendly home ware and activity products over the last eight years.
The business has projected turnover of between £1.5m and £1.8m for the current financial year.

He said: “We all find it difficult to negotiate new environments, particularly when everywhere looks the same, but for people with dementia it can be devastating.

“We decorate the environment so it means something to them, so they’re able to find their way and identify their rooms.

“These are there homes. Can you imagine how distressing it would be if you can’t find your way home?”

Private healthcare company Bupa was its first client, and is now joined by providers and NHS trusts around the country. The company has also had interest from Germany, Australia, the US and Canada.

Find developed the signage range based on evidence of how people change their behaviour due to deteriorating physical and mental ability.

Mr Rose said: “For many people as they age, one of their biggest fears is falling over things, which means they focus more on the ground. We position signs quite low so they are within their field of vision.

“Reading becomes an issue, colour becomes an issue and reflections can be challenging. To address that, all signage is non-reflective, words are written in a particular typeface, colours are high contrast and there are high-quality pictures to help people who have lost the ability to read at all.”
Customer feedback is key in product development, Mr Rose said.

“Our customers really are our greatest asset, they bring a wealth of information,” Mr Rose said.
“They tell us they are dealing with a certain problem and ask if we can develop something to address it.”

In addition to its signage products, Find has developed a crockery range and specialist clocks.
It has also created a range of traditional red phoneboxes that accommodate wheelchair users, as well as bringing much-needed familiarity to the setting.

Activity items that stimulate conversation in a non-confrontational way and enable dementia users with communication problems to interact with carers are also in development.

In 2011, the company received finance from White Ghost director Anthony Cockroft, which enabled it to “really start to make headway”, Mr Rose said.

The items save “collosal amounts of money” for homes and the NHS by allowing people to live more independently, he said.
“It is a lovely, very meaningful thing to be involved in,” he added.